How Consumers Step Up to Design a Truly Recovery-based Mental Health System

Recently there have been spirited discussions among consumers about what we want to propose as a basic change in the mental health system. Several of us have proposed that legislation be passed to ensure that every state and every community have reliable funding for consumer-run support and advocacy groups similar to the independent living centers for people with other disabilities. I liked the idea, but then I started to worry that those centers would be marginalized or co-opted as long as the mental health system remains narrowly medical. I have concluded, and have preliminary support from other leaders, that as consumers, we need to redesign the whole system and society from the bottom up, based on our lived experiences with mental health issues. I believe that only by having a vision of a truly recovery-transformed system and society, will we ever see lasting and genuine change.

“A consumer-driven system means
one which is guided by people
with a lived experience.
We know better than anyone else
what helps and what hurts in
our recovery. Every significant
administrative body in mental
health needs to have significant
participation by
Consumers/Survivors/Ex-Patients.”

In 2007, 27 statewide consumer organizations and three National Technical Assistance Centers united to form a broad-based national consumer group called the National Coalition of Mental Health Consumer/Survivor Organizations (www.ncmhcso.org). With this newfound unity and strength, the Coalition needs a national agenda.

The President’s New Freedom Commission mapped out the bold new vision of “a future when everyone with a mental illness would recover. ”The Commission went on to state that this vision could best be carried out by transforming the system to a consumer-driven system based on recovery. I want to see us carry out the vision but it is yet to be truly supported. Only piecemeal solutions have been attempted. To transform the system to a recovery-based one, C/S/Xs (consumers/survivors/ex-patients) will need to almost completely redesign it.

An example of the failure of piecemeal solutions lies in the use of peer support specialists. Most people concur that peer support is a vital component of the spirit of recovery. Accordingly, Georgia led the charge among states to make peer support a reimbursable service. In order for the system to accept peer support as a service, it made severe changes to the concept of peer support and recovery.

Recovery was broken down into a set of institutionalized steps. The first step is that a person has to accept that he or she is mentally ill. The condition is then defined as a permanent deficit resulting in a chemical imbalance. In that manner, the medical model is reinforced and recovery becomes just another term for remission.

Secondly, for peer specialists to be reimbursed, supervision needs to be carried out by “qualified mental health professionals,” which means by traditionally trained clinicians who have little understanding of peer support or recovery. Instead of validating the importance of lived experience, this type of supervision turns peers into junior clinicians. The first indication of this pitfall was revealed to me at a progressive mental health enter in California several years ago.

The administrator proudly introduced me to 13 newly hired peer specialists. I was shocked to learn however that each was primarily checking people’s medication and had no opportunity to share their personal experiences. We agents of change should not underestimate the skill with which the system is able to preserve the status quo by absorbing the language of peer support and recovery into its existing structure. That is why we are proposing a genuine transformation of the system, which is designed and carried out by persons with the lived experience who identify as C/S/Xs.

A consumer-driven system means one which is guided by people with a lived experience. We know better than anyone else what helps and what hurts in our recovery. Every significant administrative body in mental health needs to have significant participation by Consumers/ Survivors/Ex-Patients.

What Would a Consumer-driven, Transformed, Recovery-based System Look Like?

First and foremost, a consumer-driven system means one which is guided by people with a lived experience. We know better than anyone else what helps and what hurts in our recovery. For too long we have tried to educate decision makers. The time is coming when we will need to be those decision makers. This means that every significant administrative body in mental health needs to have significant participation byC/S/Xs.

A useful acronym for the changes that need to be made is STEP UP:

Consumer-Driven Services, Training, Evaluation & Policy: United for Power

S: Services and supports need to be consumer-drivenT: Training needs to be consumer-drivenE: Evaluation and research needs to be consumer-drivenP: Policy and planning needs to be consumer-driven

These changes need to be accompanied by a shift in the understanding of the problems known as mental illness and the best way to help people recover.

Those of us with a lived experience have been constructing a new paradigm over the last 35 years. We need to be the people who deﬁne these problems based on our experience, not on some outdated textbook. We need to instill hope at the very outset of a person’s recovery journey.

The consumer movement started as a civil rights movement to right the wrongs that are perpetrated against people labeled with mental illness. In the last 15 years, this has also become the recovery movement. Instead of describing the problems as mental illness, we who experience these problems prefer terms such mental health issues or life changing experiences. Dr. John Weir Perry described these as periods of reorganization of the self at the deepest levels. Underlying all these new descriptions is an understanding that if people are surrounded by people who believe in them and connect on the most human of levels, then these periods of change are opportunities for growth.

Viewing these periods as opportunities instead of symptoms of an illness means that there is meaning in unusual thoughts and behavior. It means that these unusual aspects of the person need to be understood and incorporated, not removed and eliminated. Young people today are particularly turned off by the concept of stamping out mental illness as shown in the Icarus Project’s materials.

A few of the innovative projects, which C/S/Xs have already piloted, are:

Five peer-run crisis respites — the Rose House in New York is the most developed with a drop-in center, crisis respite for up to 5 people (at 1/5th the cost of a hospital), outreach to people’s homes at times of crisis, and a warmline.

Self-determination accounts in Florida, headed by consumer Patrick Hendry, which give decision-making power to the C/S/Xs.

The Consumer Quality Initiative, a peer-run evaluation team in Massachusetts (www.cqi-mass.org).

Peers working as peer specialists (they are setting up their own national group, National Association of Peer Specialists or NAPS) and a variety of other jobs such as peer bridgers.

Drop-in-centers and recovery centers in almost every state and county.

Consumers working as personal care assistants for their peers in Oregon.

Next Steps

C/S/Xs and advocates need to seriously discuss what we would like to see in a redesigned system and society. We need to enter into discussions about the future we want. We need to share and pool the best information, experience and ideas we have for a new recovery-based system.

We need to take that knowledge and principles to the public and draw them into the need for a bottom up change. We need to overcome the discrimination and discrediting we are subjected to by the media.

We need to collectively develop a comprehensive new set of proposals to genuinely transform this system. This would be a type of national C/S/X white paper.

We should use that white paper an advocacy tool and educate decision makers, media, and public at every organizational level.

We could pick the top 2-3 recommended steps and push for success in those first.

Carry out all these steps with as broad-based participation as possible to ensure “nothing about us without us” but also recognize the advantage of working through a national consumer group such as the National Coalition of Mental Health Consumer/Survivors.

Daniel Fisher is a psychiatrist who has recovered from schizophrenia. He is a role model for others who are struggling to recover, and was a member of the White House Commission on Mental Health. He is presently Executive Director of the National Empowerment Center and a practicing psychiatrist at Riverside Outpatient Clinic, Wakeﬁeld, MA. Dr. Fisher conducts workshops, gives keynote addresses, teaches classes, and organizes conferences for consumers/survivors, families, and mental health providers to promote recovery of people with labeled with mental illness by incorporating the principles of empowerment. He has been featured on many radio and television programs, including CNN Special Report. He is the recipient Mental Health America’s Clifford Beers Award and the BazelonCenter for Mental Health Law’s advocacy award.